This is topic Cognitive problems worst symptom--anyone else? in forum Medical Questions at LymeNet Flash.


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Posted by lassie (Member # 17813) on :
 
I wonder sometimes if I have Lyme.

I can't think! People have to repeat information for me, sloooowly, I can't read anything even slightly complex, and my short-term memory is non-existant.

My LLMD says I have neuroborreliosis. Yet I don't have the emotional symptoms that seem to go along with that Dx.

This "acquired stupidity" is my worst problem.

Can anyone relate?

What, if anything, helped?

I am taking Minocycline, Zithromax, Mepron, and Bactrim. I've tested positive for Borrelia and for Fry's "mystery bug". My doc dx'd me with Babesia based on history and symptoms. Treatment started about a year ago.
 
Posted by Abxnomore (Member # 18936) on :
 
up^
 
Posted by wtl (Member # 19883) on :
 
lassie -

I can totally related through the example of my wife. She was a top notch music performer, dancer, and on top of that, an engineer until a few years ago she started this "acquired stupidity".

I do think it is the worst.
 
Posted by EyeBob (Member # 12572) on :
 
Hmmmm,

I suspect that many would agree with you. My own informal understanding of this suggests that this problem invariably improves for most, though.

I wonder if that isn't a good question to ask the Forum as well.

Has your cognitive stuff improved with treatment or not?

bt
 
Posted by MY3BOYS (Member # 17830) on :
 
i get ya !!! have slipped into "pre-dementia" status per the neurocognative testing. this from very smart, on top of it, mom/wife/full time RN (administrative on top of it)

now-- will mess up our bills, forget everything!! very fustrating

neuro recommended i start aricept, gonna post to see if others have tried that?? filing for SSD too, this aquired stupid NOT good for having other lives in your hands for sure. have not worked since last summer.

i do have the emotioal upheave as well- bio-idendical hormones help some. that one is awful too!!!! hubby does NOT understand that, thinks i am just &^%^$$# for lack of more appropriate word.

on IV tx since feb. and started tx last sept/oct-ish. not sure that things any better. every now/then focus is better or will remember stuff. but is inconsistant. better than progressive loss though
 
Posted by AliG (Member # 9734) on :
 
Neuro-cognitive issues were DEFINITELY my most troubling.

I could give you a long detailed story of my plight but I'll keep it short.

At my last relapse into DEEP stupid, I tested positive for having active Lyme, Anaplasmosis, Babesiosis(B.duncani) and Fry's "rare coccobacilli".

What seemed to help me the most with this, after having gone so far as to develop "MS" symptoms, was the following:

4 months of Biaxin,
add in - after 1 month & 1 week of the Biaxin - 12 weeks of IV Rocephin,
then, for last week of Rocephin, discontinue Biaxin & replace with Flagyl,
follow this with Bactrim DS for a month

I believe that I was doing Zhang's Artemisiae, Circulation P and possibly Allicin, along with the Biaxin.

While doing the Flagyl, I was taking cholestyramine to mop up neurotoxins.

I ended up with some gallstones & had to add in Actigall. (This was my second round of IV Rocephin. I didn't have it the previous time around) I understand that some LLMDS give the Actigall with Rocephin to avoid the biliary sludging. I don't seem to be having a problem with the gallstones anymore.

From there I went aggressive on the Babesia duncani because I believed that I had yet another flare of Babesia symptoms, but I do believe that gave me the most relief from the neuro-cognitive stuff.

While addressing the duncani, we made sure that we were still covering neuro-Lyme to some degree.

At this point, my treatment would be addressing Anaplasmosis while still having some effect on Lyme.

I've had a lengthy bout of the flu (I think swine) which clouds my current treatment picture but we are optimistic to try weaning me off ABX after about 3 more months to see if we've tackled this monster for good.
 
Posted by AmyPW8 (Member # 11504) on :
 
My cognition was severly affected. I got relief initially on my own, waiting for my LD appt, with salt/c, olive leaf extract, and cat's claw. Doxy really helped when treatment started.

Mine came back slowly but surely with additional treatment. Hang in there!
 
Posted by Amy C (Member # 19297) on :
 
I am with My3boys! Same thing!

I was a busy mom with a challanging career and graduated 4.0 from college.

I not only could remember everything but I remembered everything for everyone else in my family. When I started having memory problems they were screwed. LOL

Now I can't remember anything unless I write it down and practically attach it to my body. I use my cell phone calendar to put everything I need to do each day on it.

I can't learn new things and comprehension is a problem. I have to get my husband to help the kids with homework sometimes. I also forget common words all the time!

It is embarrassing when you are talking to someone and keep forgetting words or people's names. You tend to sound really stupid. People have made fun of me because they don't know. Well they have made jokes to me about it. But it is surely not funny to me [Frown]

Anyways, I am not sure if this has improved for me much? Maybe a little or maybe I am just used to it and I have tricks that I use to help me remember things.

I took Doxy since Oct 08 and then added Biaxin in May. Off Doxy now and take Biaxin and Clindamycin.
 
Posted by ruggie100 (Member # 21415) on :
 
I have noticed great improvement in short time taking 1/2 pill of biaxin and 1/2 pill of ceftin at bedtime. I don't know how long i will improve.... just happy i am improving. Yesterday was first day in 7 years could play piano again.

7 years ago I was so cognitively messed up I couldn't get my own food, couldn't work stove, sat in chair and stared at wall for 8 hours at a time (34 yrs old at the time). I just BARELY got to lyme doctor in April, 2009. Suffered sooo many years, finally some relief.
 
Posted by bettyg (Member # 6147) on :
 
it's a toss up of these major things for me:

PAIN 24.7 in all 18 of 18 fibro trigger points.

EXTREME SENSITIVITIES TO:

lights/glare/reflection like looking directly at the sun!

noise/sounds all sound like base drum; i can hear a pin drop & hubby has lost hearing in 1 ear and can't hear out of 75% of other ... everything is super loud on tv!

chemicals ... perfume, cologne, hair spray, CIGARETTES & SMOKE ON PEOPLE'S CLOTHING, DIESEL FUMES, cleaning/office products w/smells, and the list goes on


and COGNITIVE as you all stated above! same reasons as you all stated.
 
Posted by lassie (Member # 17813) on :
 
Thanks for all the replies!

I'm so sorry it's taken me so long to get back here, but I've had severe motion sickness followed by migraines, so wasn't too keen on being on the computer!

My sympathies to my fellow sufferers! When I asked my LLMD about this, he said this is the symptom that's reported the most and is the most difficult to treat.

It's good to hear from those of you who have made headway on this front. I hope we can all be encouraged by that -- I certainly was! Thanks for posting.

I saw my LLMD recently and I will be starting on Omnicef soon. He feels this drug is similar to Rocephin in the way it targets the CNS. He would prefer to try oral meds before Rocephin, something I am in total agreement on as the thought of having a PICC line "inserted" terrifies me (risk of infection, etc.).

I hope we all can rid ourselves of acquired stupidity!

--Lassie
 
Posted by MADDOG (Member # 18) on :
 
Hi Lassie,We used to call this thing BRAIN FOG here.

Before i found out I had lyme I called it my dumba&& months.

Complete months at a time when I could remember nothing.

I have been driving only a few miles away from here and didn't know were I was.

I have been better for years then have it come back again,off and on.

I really like your lymenet name Lassie.

MADDOG
 
Posted by lnc2000 (Member # 18440) on :
 
Lasie,

I had the PICC line with Rocephin. It's awesome for me, all (i meant ALL) symptoms went away 95%.

I totally loved it, but I could only get it for 28 days as insurance don't cover longer than that.

My doctor followed up with Ceftin afterward and i still feel great for most part now.

If you can, i think you shuold get PICC and Rocephin, you'll see the big different.
 
Posted by klutzo (Member # 5701) on :
 
This is not my most serious problem from Lyme, but it is the one that bothers me the most.

Unlike most of you, I've had no ABX and can't, due to allergies.

I have found two things that help my cognitive problems, however.

One is liquid Diflucan. The other is thyroid medication.

If my brain fog gets worse, I know I either have yeast overgrowth or my thyroid med needs to be adjusted upwards.

klutzo
 
Posted by ConnieMc (Member # 191) on :
 
Read this:

http://www.anapsid.org/cnd/files/rissenberg.pdf

When I was at my worst cognitively, this article seemed to put all my problems and struggles in to real words. When I had a neuropsychological eval with a neuropsychologist I knew I took this article to him because I wanted him to understand exactly how my brain felt.

After all the testing, he did indeed feel that I fit right into the pattern described in this article.

I like this article as it gives specific examples of functional deficits.

I was able to regain much of my brain function but will never be where i once was. i cannot multitask or listen to 2 sources at once and sometimes have difficulty maintaining a train of thought.

This is a good article to give to any or all of your providers who do not understand Lyme.
 


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